The Unique Challenges of Anxiety on the Autism Spectrum

A boy sits on bleachers with his head on his kneesOne of the most frustrating aspects of being on the autism spectrum is the constant anxiety that accompanies it. What does it mean to be on the spectrum and feel anxiety?

If you are not on the spectrum, it might be very difficult for you to even imagine what it is like because your experience is so different. To you, anxiety may be a fleeting sensation most often related to feeling uncertain or fearful. Once a situation is clarified or resolved, the anxiety associated with it typically wanes. You may return to your “normal” state and go on with your day.

Individuals on the spectrum, however, do not have the opportunity to return to a non-anxious state because their daily life is rife with the potential to surprise or confuse them. They live in a constant state of alertness because anything nuanced—and therefore unfamiliar—has the potential to be filled with traps for the unwary. They have had plenty of experience with saying or doing the wrong thing and paying the social consequences, so they are constantly alert to new possibilities for doing it again.

Since piecing together social experiences to create a template for future encounters is a cognitive process rather than an intuitive one, it can only take a person so far. Most of what we glean from an interpersonal communication is nonverbal, with some estimates for this as high as 70%. When you consider that the nonverbal is essentially invisible to a person on the spectrum, it is no surprise that anxiety would follow.

For example, facial expressions, body language, tone of voice, figures of speech, the physical distance between two people, innuendo, the cadence and inflection of speech, as well as its volume all provide information to neurotypical individuals which is not perceptible to those on the spectrum. In fact, many neurotypical people don’t realize how much communication is carried outside the actual spoken words. That is one of the reasons the anxiety of autism is such a difficult concept for people to grasp.

How You Can Help

What can you do to reassure someone who is on the spectrum? Can you help resolve some of this anxiety?

If it is someone you don’t know well, you can do your best to speak in concrete terms and to stick to one topic at a time. When you do change the topic in a conversation, try not to do it abruptly. Remember that humor often relies on wordplay, and that this can be elusive to a person on the spectrum. Be mindful that a lack of eye contact can mean that the person is trying very hard to follow what you are saying, and that the intensity of looking in your eyes at the same time may make that more difficult. Remember that it is not a conscious choice not to be socially adept. Be kind to those who appear not to be comfortable in social situations.

Any information about the secret codes and unwritten laws pertaining to communication in social situations that you can explain clearly to a person on the spectrum is likely to be met with confusion at first, and perhaps even incredulity. However, if you can help someone make sense of it, you will be providing a valuable piece of intelligence that might otherwise remain outside that person’s ability first to perceive and then to understand.

If it is a close friend or family member, you can have conversations that frankly discuss some of the otherwise inscrutable aspects of verbal and nonverbal communication. For example, a person I worked with in therapy was astonished to learn that the way members of the team at work seemed to make fun of each other was actually their way of demonstrating mutual appreciation and inclusiveness. To this person, the behavior appeared to be relentless badgering and ridicule until we discussed the underlying social conventions that had been invisible to him. He then came to see that his coworkers were behaving that way toward him as well. What had previously been experienced as hurtful now came to be seen as the language of group membership in that particular environment. His anxiety decreased significantly once this began to make sense to him. He decided he was not particularly comfortable in making an attempt at returning the behaviors in kind, because he wasn’t certain he could strike the right note in order to do so effectively, but he did develop a way of recognizing and receiving kidding from others without taking offense to it.

Any information about the secret codes and unwritten laws pertaining to communication in social situations that you can explain clearly to a person on the spectrum is likely to be met with confusion at first, and perhaps even incredulity. However, if you can help someone make sense of it, you will be providing a valuable piece of intelligence that might otherwise remain outside that person’s ability first to perceive and then to understand.

The greatest gift you can provide is your awareness of how exhausting it is for a person on the spectrum to navigate the neurotypical world all day long. Respecting the need for private time to decompress after a long day of living in an alien culture and speaking a confusing language requires restful, quiet interludes for recalibration and peace of mind.

Anxiety is part of being on the spectrum. Your understanding of this can help relieve it. Remember, though, that it will never completely go away.

References:

  1. Ekman, P. (2007). Emotions revealed. New York, NY: St. Martin’s Griffin.
  2. Ekman, P., & Friesen, W. V. (2003). Unmasking the face. Cambridge, MA: Malor Books.
  3. Meherabian, A. (2007). Nonverbal communication. Piscataway, New Jersey: Aldine Transaction.

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  • Deanna

    Deanna

    January 5th, 2016 at 9:43 AM

    I would feel so bad for any family having to live with this double whammy of anxiety and autism. That must be extremely difficult especially because there will be times when the coping skills would not be there to be able to deal with that, and that could cause even more anxiety.

  • Jay

    Jay

    January 6th, 2016 at 8:23 AM

    so I wonder is there anything that helps identify what the primary diagnosis is, and then if the anxiety then begins as a result of that or is it just something that is concurrent in some patients?

  • claira

    claira

    January 6th, 2016 at 2:43 PM

    There are so many different ways that those of us who do not live on the autism spectrum to help out with those who do… but it can be a challenge when we struggle with understanding the very real fears and anxieties that many of them live with and are surrounded by every day.

  • Tripp

    Tripp

    January 8th, 2016 at 9:51 AM

    Thank you so much for always giving needed attention to this community and their famileis which are so often overlooked.

  • Rowena

    Rowena

    January 12th, 2016 at 2:47 PM

    I worry so much about the miscues that my son reads and gives off as he is on the autistic spectrum. He is pretty good with most people, but you know he just has that lack of affect that people often use to read into words so I think that there is a lot that goes without saying that probably is never interpreted the right way. I do what I can to help him get through this world that can be so mean, but you know, I can only be there part of the time and the rest of the time I just hope that what we have done and how we have prepared him will be enough.

  • davis h

    davis h

    January 13th, 2016 at 3:04 PM

    Any time there is a concurrent thing that goes together, and in these cases anxiety and autism, it can make things so much more difficult and address than it would be if you were only dealing with one specific thing.

  • Sarah Swenson, MA, LMHC

    Sarah Swenson, MA, LMHC

    January 22nd, 2016 at 5:45 PM

    I agree that the challenges are greater when combined. It’s impossible to separate high-functioning autusm and anxiety because of the pressures associated with a primarily cognitive approach to life, and the high risk of making an error of judgment.

  • Okwuchukwu treasurer's

    Okwuchukwu treasurer's

    February 3rd, 2016 at 11:11 PM

    I’m a student in college of education studying educational psychology. Watching all your write ups i can really say that I’m impress, so I will like to know more about it. Because presently i work with children with autism (special need) in an institution (the zamarr institute). Thanks

  • R

    R

    June 6th, 2018 at 4:57 PM

    Sarah, I have been reading some of your articles and have really appreciated your understanding of the challenges faced by a couple when one is neurotypical (me) and one has high functioning Autism or Aspergers (my husband). While I know it is essential for the neurotypical spouse to learn about the challenges of being on the spectrum and what it means to live in a perpetually confusing world with threats around every corner (as a tool for self preservation if nothing else), I am constantly struck by the desperate irony that the neurotypical spouse is navigating similar obstacles (all be it on different terrain) in their marriage and in social relationships, and are in need of having the same understanding afforded to them (though this can’t come to them usually, as they don’t have the disability). They are….
    1. Constantly needing to decode and asses their partners perspective and always being at “high risk of making an error of judgement”. The consequences of these errors of judgement, or lack of understanding on the neurotypical spouses part are catastrophic in these relationships. My ‘not getting it’, has created painful patterns in my marriage that we seem powerless to resolve or heal. My ‘not getting it’ triggers painful meltdowns for my spouse and my own emotional distress. The accumulative effect of these weigh heavy.
    2. The experiencing of isolation and of others not being able to relate to your world. When you live in a marriage with a spouse on the spectrum you find yourself straddling two worlds, but not belonging to either. It’s a whole new world of it’s own and very few people will understand you or much about your inner experience or your life.
    3. The impact on the neurotypical spouses relationship with their self, the impact on their personal, family, social and work life is also “exhausting”. When I read the second last paragraph of the above article I just thought “Wow! How frustrating and impossible…. isn’t this just the reality of my experience and my needs too?”. If you don’t mind me re-phrasing your words, this is what I feel so badly needs to be said alongside your words, every time, ….”The greatest gift you can provide is your awareness of how exhausting it is for a [neurotypical] person [in a relationship with someone] on the spectrum to navigate the [non] neurotypical world all day long. Respecting the need for private time to decompress after a long day of living in an alien culture and speaking a confusing language, [experiencing the pressing demands of the many, many additional responsibilities], requires restful, quiet interludes for recalibration and peace of mind.” This may seem to some that I am totally missing insight into how challenging a disability it is to be on the spectrum, and how I am caught up in my own challenges and perspective. However it is only because of the intimate walk I have with Autism in my life that I can say this. Supporting those closest is fundamental to supporting any person with a disability. High functioning Autism and Aspergers are very much hidden disabilities and people with these challenges often come to our attention (certainly do to mine) as the most quirky and interesting and attractive personalities. The difficulties that arise over the years in the relationship are so hard for even the couple themselves to understand, compounding and adding layers to the hidden aspect of the disability and the impact it has on the neurotypical spouse and their relating to and connection with their social networks. Like every disability, spectrum issues can have devastating impact on intra-personal, marital and family relationships and functioning. I feel that in general we have such a long way to go to really understanding the lived experience of those living with high functioning Autism and Aspergers…the individuals themselves and those loving, and living lives with them.

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